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Travel Insurance
This is the first time I have posted on here although I read it daily. Has anyone experienced the following or can offer any advice regarding it. I was originally diagnosed in May 2021 with ET - CALR and at that time was covered by my partner's travel insurance. In March 2023 my diagnosis was changed
This is the first time I have posted on here although I read it daily. Has anyone experienced the following or can offer any advice regarding it. I was originally diagnosed in May 2021 with ET - CALR and at that time was covered by my partner's travel insurance. In March 2023 my diagnosis was changed
NannaFlo
in
MPN Voice
11 months ago
Ruxolitinib & raised cholesterol
I have been on Ruxolitinib for nearly 9 years now managing my primary myelofibrosis. I have been advised today that I now have a very high cholesterol level of 9.4. We went through my family history and diet but it seems that Rux seems to be the main contributory factor. The sheet does say this is
I have been on Ruxolitinib for nearly 9 years now managing my primary myelofibrosis. I have been advised today that I now have a very high cholesterol level of 9.4. We went through my family history and diet but it seems that Rux seems to be the main contributory factor. The sheet does say this is
Cazbolac
in
MPN Voice
11 months ago
Unprecedented Case: Myelofibrosis Reverts to Polycythemia Vera Phenotype
»In a rare and unprecedented case, a 72-year-old man diagnosed with JAK2V617F mutated polycythemia vera (PV) experienced a transformation to myelofibrosis (MF) but later reverted to a PV phenotype. The study was presented at the International Congress of Myeloproliferative Neoplasms held November 2-
»In a rare and unprecedented case, a 72-year-old man diagnosed with JAK2V617F mutated polycythemia vera (PV) experienced a transformation to myelofibrosis (MF) but later reverted to a PV phenotype. The study was presented at the International Congress of Myeloproliferative Neoplasms held November 2-
Manouche
in
MPN Voice
11 months ago
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To Trial or not to Trial?
I have decided not to trial. Going to just do the Venetaclax & Obin protocol. I’m just not in the mood for the extra appointments and brain damage that invariably comes with them. I’m waiting for a start date. Had the bone marrow biopsy and endless other tests this week - decided not to peek at the
I have decided not to trial. Going to just do the Venetaclax & Obin protocol. I’m just not in the mood for the extra appointments and brain damage that invariably comes with them. I’m waiting for a start date. Had the bone marrow biopsy and endless other tests this week - decided not to peek at the
SunnyCA
in
CLL Support
8 months ago
Antiinflammatory medications with Jakafi
I've read that there is a moderate risk of bleeding after using ibuprofen with Jakafi. I'd appreciate hearing reactions from people on Jakafi who have taken ibuprofen and other anti-inflammatory medications. Which anti-inflammatory medications would minimize the risk of such interactions? Thanks, Steve
I've read that there is a moderate risk of bleeding after using ibuprofen with Jakafi. I'd appreciate hearing reactions from people on Jakafi who have taken ibuprofen and other anti-inflammatory medications. Which anti-inflammatory medications would minimize the risk of such interactions? Thanks, Steve
sbs_patient
in
MPN Voice
11 months ago
Immune system changes during BTKi treatment
Hi, as a relative newbie here, please forgive me if this is a really naive question. I am soon to begin treatment with a BTKi drug. I know that having (a mutated form) of CLL means that my immune system is significantly suppressed and that BTKi treatment will further inhibit the immune system. My haematologist
Hi, as a relative newbie here, please forgive me if this is a really naive question. I am soon to begin treatment with a BTKi drug. I know that having (a mutated form) of CLL means that my immune system is significantly suppressed and that BTKi treatment will further inhibit the immune system. My haematologist
Fogey
in
CLL Support
9 months ago
MRD Results
My hubby's CLL Dr called today and gave us the good news. My hubby's blood has zero CLL, and his bone marrow dropped 25% to .12%. His Dr wants him to keep taking his venetoclax and acalabrutinib so that his bone marrow gets CLL lower or totally out. To date, my hubby will be on this treatment 1 year
My hubby's CLL Dr called today and gave us the good news. My hubby's blood has zero CLL, and his bone marrow dropped 25% to .12%. His Dr wants him to keep taking his venetoclax and acalabrutinib so that his bone marrow gets CLL lower or totally out. To date, my hubby will be on this treatment 1 year
spi3
in
CLL Support
9 months ago
New MF drugs in development by Incye
Hi All, just as a quick update, Incyte has started the phase 1 trial for the CALR anyibody and they also disclosed a new potential treatment for the JAK mutation which may enter clinicial trials in the coming months which they say could also be disease modifying. See some quotes from their 3Q 2023
Hi All, just as a quick update, Incyte has started the phase 1 trial for the CALR anyibody and they also disclosed a new potential treatment for the JAK mutation which may enter clinicial trials in the coming months which they say could also be disease modifying. See some quotes from their 3Q 2023
CanadaG
in
MPN Voice
11 months ago
Engaging Conversations: Chats with MPN Specialists
»Embark on a journey of enlightening dialogues surrounding Myeloproliferative Neoplasms (MPNs) with the distinguished specialists in the field. These live chats offer a unique opportunity to delve into the intricacies of Polycythemia Vera (PV) and Essential Thrombocythemia (ET) with the expertise of
»Embark on a journey of enlightening dialogues surrounding Myeloproliferative Neoplasms (MPNs) with the distinguished specialists in the field. These live chats offer a unique opportunity to delve into the intricacies of Polycythemia Vera (PV) and Essential Thrombocythemia (ET) with the expertise of
Manouche
in
MPN Voice
11 months ago
Venetoclax
Hi all Well we finally got to see a specialist. They did a bone marrow biopsy which showed 50% CLL infiltration on top of the pancytopenia. They have suggested treatment with Venetoclax only which they have said may reduce the frequency of transfusions which is currently weekly. I have only ever
Hi all Well we finally got to see a specialist. They did a bone marrow biopsy which showed 50% CLL infiltration on top of the pancytopenia. They have suggested treatment with Venetoclax only which they have said may reduce the frequency of transfusions which is currently weekly. I have only ever
JoeMcDote
in
CLL Support
9 months ago
Metformin Use and the Risk of Myeloproliferative Neoplasms in a Danish Population Based Cohort
I am very curious if any MPNérs are using Metaformin and what effects they are experiencing on their MPN... See: In this study we found an inverse association between MT use and risk of MPNs indicating a potential protective effect of MT on the development of MPNs. The protective effect was most pronounced
I am very curious if any MPNérs are using Metaformin and what effects they are experiencing on their MPN... See: In this study we found an inverse association between MT use and risk of MPNs indicating a potential protective effect of MT on the development of MPNs. The protective effect was most pronounced
pvdm
in
MPN Voice
11 months ago
Is it ok to smoke marijuana or to take edibles with cll?
It gives me relief from general anxiety and unsettling feeling of going to a medical facility. Has anyone had any experience with using this for the two reasons mentioned above? Thank you.
It gives me relief from general anxiety and unsettling feeling of going to a medical facility. Has anyone had any experience with using this for the two reasons mentioned above? Thank you.
Jessielab
in
CLL Support
9 months ago
Bone pain
morning all does anyone else get really uncomfortable bone pain with ET I have for years had pain in thigh and upper arm bones sometimes so sore. My discomfort now is in pelvic bones especially the bones I sit on . I think the ischial tuberosity… ? Any one else
morning all does anyone else get really uncomfortable bone pain with ET I have for years had pain in thigh and upper arm bones sometimes so sore. My discomfort now is in pelvic bones especially the bones I sit on . I think the ischial tuberosity… ? Any one else
Tipsy2023
in
MPN Voice
1 year ago
Newly diagnosed
So I have had chronic lymphatic
leukaemia
for 6 years and recently diagnosed with prostate cancer.Father died from it and brother also has just had his prostate removed. .I’ve scored3/3 on Gleason, MRI showed a small area of shadow from which they took 17 and 2 active from that.
So I have had chronic lymphatic
leukaemia
for 6 years and recently diagnosed with prostate cancer.Father died from it and brother also has just had his prostate removed. .I’ve scored3/3 on Gleason, MRI showed a small area of shadow from which they took 17 and 2 active from that.
Stacky66
in
Prostate Cancer Network
1 year ago
Ruxolitinib not working so well
I was diagnosed with Myelofibrosis Stage 2 this summer. I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!! The CRP is below 1mg so it is not likely an infection has caused this sudden increase in the platelet
I was diagnosed with Myelofibrosis Stage 2 this summer. I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!! The CRP is below 1mg so it is not likely an infection has caused this sudden increase in the platelet
Searcher56
in
MPN Voice
1 year ago
Generic version of Jakafi for PV ?
Expiry of Jakafi (Rux ) Patent # 7,598,257 (Incyte) Patent expiration date is : 24th December 2027 Patent use: FOR TREATMENT OF POLYCYTHEMIA VERA (PV) IN PATIENTS WHO HAVE HAD AN INADEQUATE RESPONSE TO OR ARE INTOLERANT OF HYDROXYUREA Thus we can hope that a generic appears around that time for
Expiry of Jakafi (Rux ) Patent # 7,598,257 (Incyte) Patent expiration date is : 24th December 2027 Patent use: FOR TREATMENT OF POLYCYTHEMIA VERA (PV) IN PATIENTS WHO HAVE HAD AN INADEQUATE RESPONSE TO OR ARE INTOLERANT OF HYDROXYUREA Thus we can hope that a generic appears around that time for
Innessant
in
MPN Voice
1 year ago
switch from jakafi (RUX) to Ojjara/momelotinib
has anyone made the switch yet ? The doctor is planning to switch my husband over. He is 74 yrs old with high risk MF. Had taken HU since 2020 then switched to jakifi five months ago but made him more anemic with hemoglobin down to 6.6-7.5 so required blood transfusions monthly Just curious if anyone
has anyone made the switch yet ? The doctor is planning to switch my husband over. He is 74 yrs old with high risk MF. Had taken HU since 2020 then switched to jakifi five months ago but made him more anemic with hemoglobin down to 6.6-7.5 so required blood transfusions monthly Just curious if anyone
Bainbridge
in
MPN Voice
1 year ago
Should I be worried?
Hi All, my Haemo Lady, just called me with my Bone Marrow Biopsy results, She, said they were heavily infiltrated with CLL. A recent body scan also showed a large lump in my stomach, she is not sure if it is related to my CLL, or perhaps an aggressive lymphoma. She has ordered a needle biopsy of this
Hi All, my Haemo Lady, just called me with my Bone Marrow Biopsy results, She, said they were heavily infiltrated with CLL. A recent body scan also showed a large lump in my stomach, she is not sure if it is related to my CLL, or perhaps an aggressive lymphoma. She has ordered a needle biopsy of this
Vindicatrix
in
CLL Support
10 months ago
venetoclax and obinutuzumab treatment for cll
Hi, I have finished the above 12 months treatment for cll tp53 mutated, I now have 2 monthly checks and my lymphocytes are low, is this a cause for concern?
Hi, I have finished the above 12 months treatment for cll tp53 mutated, I now have 2 monthly checks and my lymphocytes are low, is this a cause for concern?
dellkota
in
CLL Support
10 months ago
First six-month blood test, and my lymphocytes have gone down!
I’m soon to be 55. I was diagnosed in the UK with MBL this summer. My lymphocytes were at six with over 50% of them monoclonal cells. I’ve just had my six-month check. I’ve come down to 4.8. I know that these numbers can move around quite a lot, but for now I’m really happy with the trend. I did change
I’m soon to be 55. I was diagnosed in the UK with MBL this summer. My lymphocytes were at six with over 50% of them monoclonal cells. I’ve just had my six-month check. I’ve come down to 4.8. I know that these numbers can move around quite a lot, but for now I’m really happy with the trend. I did change
Jazzandblues
in
CLL Support
10 months ago
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